Pillar vs UPPP, desperate for advice

[Sara]

My ENT wants me to have a UPPP along with a few other procedures. I am reluctant to have the surgery due to the low success rate. I also am frightened by the potential side effects. I probably am not a candidate for a dental device and I could not tolerate CPAP. I am considering the Pillar procedure which my ENT does not offer. He says it is for snoring only and will not improve OSA.

Is the Pillar as effective as the UPPP? If I did have to have the UPPP sometime later on would having the pillar procedure done now make the UPPP surgery more complicated.

Thanks

[day for night]

I'd try the Pillar simply because it is reversable. the UPPP is permanent and you will be stuck with the effects for ever. I (like many others) had the UPPP. I had great results at first, but over time(like many others) my apnea returned. Try the pillar first. If it works, great. If it doesnt, you can have the pillars removed if you wish. If the UPPP doesn't work, you have changed your throat forever.

[Less Sleepy]

When you ask ENTs what the success rate is for UPPP, they will generally tell you 50%. Understand that NO controlled studies have ever been done to establish that number. A few small studies have suggested that the number is probably closer to 15%. You also have to make sure your definition of success may not be the same as your doctor's definition. Your definition is that OSA is cured with no CPAP needed. Your doctor's definition might be any reduction in the number of events on a sleep study, or, more likely, a few positive answers you give on a questionaire 3 months after surgery.

The only way to know if UPPP has cured or improved OSA is for a follow-up sleep study done 6-12 months post-op. Ask your ENT if that is part of his protocol for surgery. If it isn't, I would change doctors. In my opinion, UPPP is an unproven medical procedure.

By the way, who told you that you probably aren't a candidate for the dental device? Per chance the same ENT who wants to do the UPPP?

If you want to go the surgical route to curing OSA, it will probably include MMA/GA, which is a very big operation, but does have a proven track record of curing sleep apnea, as does tracheotomy. You might want to look up posts by billinseatle:
www.talkaboutsleep.com/message-boards/viewtopic.php?t=10869&highlight=
www.talkaboutsleep.com/message-boards/viewtopic.php?t=11895&highlight=
www.talkaboutsleep.com/message-boards/viewtopic.php?t=11752&highlight=
www.talkaboutsleep.com/message-boards/viewtopic.php?t=12078&highlight=

To quote one post by Bill:
"Good morning,

"No way are 50% of sleep apneics cured by surgery or a procedure !

"Friends, don't be bamboozled !

"There are only two operations in the medical literature that have long term positive outcome data. Those are a tracheotomy (hole in the neck) and the MMA/GA combination (jaw and tongue advancement). Both are extreme...but they work !

"As time goes on, I'm sure other procedures or appliances will be reported as successful over a reasonable period. As of now, they are too new (relatively). But I'm bettin' that the pillar; TAP; RF ablation data will be compiled around the corner...it's just not on the books yet. So we get early anecdotes and helpful reports for now.

"The difficult part about this is that the causes are multifactorial. Frequently in the same individual more than one procedure or device is needed to get the job done. There is a column of air that requires that a space be created...not just one obstruction in one area .While noses and tonsils (and perhaps even the dreaded UPPP) may help, they don't address the multiple sites (upper airway and tongue base for starters).

"Any surgery is a big deal. GET MULTIPLE OPINIONS ! Vet your surgeon and facilities !

"While an individual surgeon can say you have a 80% chance of "cure," that is only an individual estimate. With the exception of a trach or MMA/GA such high numbers ARE NOT science based numbers for the general population.

"Many successfully treated people move on and never post again. Some of us with 80 hr/week jobs still do to provide balance and knock-down myths about the more common OSA surgeries .

"Cheers.

"Bill"

[Billinseattle]

Yup,

What that guy said ...

Anyway, my stance on the UPPP is less militant...and more cautionary.

For most people, it is doable, tolerable...but not desireable. Certainly not effective for most people who are looking for a "cure" and not just mild-moderate improvements.

The weird thing is that a generation of ENT doctors were trained and raised on the UPPP. They know what they were trained to do. It is an elegant idea...on paper. I'm sure it does work in some people. Unfortunately, it doesn't work in most people...and no one seems interested in really studying the effectiveness of the UPPP in a large cohort study with follow-up sleep lab data.

Enough ranting. Sara, I'd try the pillar (but it too will only result in mild improvement). Combined with a TAP dental device, or another procedure, it may provide the improvement you seek. A UPPP might be worth the gamble, as long as you are aware of the risks/benefits and have realistic expectations. As of now, there are only two operations that provide a "cure" for OSA and they are both extreme.

Best of luck.

Bill

[Billinseattle]

Oh...by the way...

I am 7 months out from my extreme procedure (MMA/GA) and am apnea-free. It was a big hairy deal with a fairly long recovery period. However, well worth it if you are trully out of other options.

My UPPP, while not that big 'a deal, was largely a waste of time. It afforded almost no improvement in my OSA.

Bill

[frequenseeker]

Sara, why are you not a candidate for a dental device?

[Sara]

Thanks for the advice. I have been under the weather for a few days and have not been able to get on the computer.

I have a very severe cough due to allergies, asthma and reflux. I cough during the night also, often to the point of vomiting. My mouth has to be unincumbered. That is why I shy away from a dental device. I have also thought how painful coughing would be after a UPPP, makes me cringe just to think about it.

I think the pillar is my only choice and I know the stats on it are all that great either.

I am on my own, I am getting no help from the sleep doctor or my general doctor. It is so frustrating. I don't know what I would do without your help. Thanks so so much.

[Less Sleepy]

Your coughing might be due to acid reflux, caused by untreated obstructive sleep apnea. I had almost a constant, asthmatic cough and recurrent bronchitis before CPAP. Cough's gone, and I haven't had bronchitis once in the 20 months since starting CPAP. The turbinate reduction and septoplasty (if that's what you need) might make it possible to tolerate CPAP, and your cough and might improve.

[frequenseeker]

I agree with Less Sleepy, CPAP or whatever pap might reduce your symptoms. Why can you not tolerate CPAP - maybe there are some solutions there...?

[Sara]

Thanks. I coughed on CPAP as well. My sleep study with CPAP noted the amount of coughing.

I could not tolerate CPAP. I never slept more than an hour with it on. I tried for four months with virtually no support from the provider or the doc. I am a very restless stomach and side sleeper. I think if I were a calm back sleeper I would have had no problem. I am also an insomniac. My arrousals were greater with CPAP then without.

I had to take sleeping pills to fall asleep with the CPAP on then I would rip it off in my sleep. The apnea was actually worsened by the effects of the medication. It was kind of a no win situation.

I am considering the septoplasty and turbinate reduction.

BTW the ENT did not look down my throat. How does he know a UPPP and tongue reduction is what I need?

[Less Sleepy]

Did your ENT do a thin fiber endoscopy? To do that, he would thread a fiber-optic scope up your nose and down through the back of your throat. It's done under local anesthetic, and not nearly as bad as it sounds (it wasn't at all uncomfortable for me), but you would know if you had it done.

If he did not do a thin fiber endoscopy, he doesn't know that a UPPP and tongue shaving is what you need, and you really need to see a different ENT. Have you looked into seeing someone at a multi-discipline sleep clinic at a teaching hospital? At the very least, it sounds like you could use a different set of local doctors.

[Sleepy Stoboy]

Less Sleepy couldn't be more right.

You must get an ENT who will scope you. It's uncomfortable, but necessary. Don't trust any ENT who says otherwise. My ENT even after the scope, found it difficult to narrow down the issues. I saw two ENTs. The first, a fast-talking, type A doctor, immediately prescribed UPPP/tonsilectomy after looking down my throat with a tongue suppressor. He told me he was pretty booked up, but could get me in within a couple of weeks. This ENT also told me that pillar would be a waste of time, and that it was only for snorers. My post pillar stats would later show this cocky doctor to be wrong.

That weekend I found this board. Saved me from a painful and low-gain operation as Bill so eloquently puts it. I read up on CPAP alternatives and realized a few people on this board were blazing the pillar trail, and also following that up with a dental device.

I found a second ENT, who was unbelievably thorough. He gave me the straight dope on pillar. That it couldn't guarantee any recovery, but wouldn't hurt me to try. He knew the clinical study statistics, and they were fairly low for those of us with a +30 RDI. This guy has now scoped me 3 separate times. He was thrilled with a 50% reduction from the implants, although I sure wish it could have cured it outright.

So, word to the wise, when going the ENT route, consider at least two if not three consultations. Pillar is a new procedure, and some of the old school docs just don't know much about it. You need to find a doc who is staying current.

Best of luck.

[frequenseeker]

Sounds like you could do a trial of bipap. It can be alot more comfortable than cpap. If you could tolerate it, you might sleep with less restlessness and arousals. The mask might have been an issue, did you try the Swift? It allows position changes fairly well. Others have posted here on various masks for position changes and I think there is at least one other one to try.

[Billinseattle]

Sara,

You need new doctors.

Find a sleep doc who can sit down and answer any question that you have.

Find an ENT surgeon who will do a complete exam....including a fiberoptic nasoscopic exam with a mueller maneuver, and possibly a panoramic cephalogram (Xray). You have an ENT surgeon trying to pay for his boat who wants to do procedures of marginal benefit that will cause you pain and money without an adequete exam !

As you see from my posts, I am not against surgery...I am for surgery that works ! I'm also leary of people promoting procedures without fully examining or informing their patients.

Since you are the consumer here, you definitely should look into new sleep docs and surgeons.

Best of luck,

Bill

[artroo]

for starters i think that there's a bit of a parrot syndrome on this board....everyone seems to have the same response "UPPP is a high pain low benefit procedure, studies have shown that only .0002% people have gotten any benefit and only for a short period of time." here's the thing that most people are neglecting to mention. the average person with sleep apnea is severely overweight. a good candidate for uppp is in good shape (ie not overweight), has large tonsils, and the ENT doc has a good idea that it's not your tongue that's causing the apnea.

I got the procedure done about a month ago. I'm a tri-athlete and have a high pain tolerance (i've had studies done where my body does not produce as much lactic acid and also i cope with pain very well.) the first week sucked. you can't eat solid foods. but, by the 2nd day, i was walking my dog, doing yardwork, and even some work.

is it risky? of course it is...it's elective surgery. but, i was a good candidate (had extra large tonsils) and i did not want to live with a machine for the rest of my life. i knew that there was a chance that the surgery would not be successful but at a minimum knew that i'd be able to breathe better (had a septoplasty and turbinate reduction done as well) and reduce my snoring. Was it successful? not 100% sure yet but i do know that i feel very rested in the morning (i used to have headaches and felt like i just ran a marathon) and my girlfriend says that i'm no longer snoring (she's sleeping all through the night now) and that it doesn't sound like i'm choking myself anymore.

so don't let these naysayers freak you out....there is another side to the story.